ShakeyTheOwl

YES! recently went through this. (for about two weeks) One of the days it was so challenging, lifting head off pillow was tough, being in a car? really really really hard. Nausea included. (BP was within range and sugars too for me) We added more table salt to meals and between nausea drank electrolyte water. (nuun tabs)

Just a random thought here. If interested, it would seem the "e-cig" may be best way to deliver the nictotine?? (it's vapor, so not tobaccco form of ingesting nitcotine) Have seen these at the gas stations, one "e-cig" apparently is equivalent to two packs of tobacco leaf cigerattes. Also, the dose of nicotine can be controlled via the "e-cig" (low to high nictotine) Have a few friends that have had great success in quitting with these, and they stated how you can "smoke" it anywhere, no smell, no smoke, etc.

am terribly sorry. is there anyone you could phone up? for support ? Please know you are not alone. (can relate to this, from being housebound and brain fog)

Sheila, hoping that you get some reprieve, and wish you strength until your appt in July. Lol, I'm in bed under down comforter identical to nose being cold as Katybug states. And i wear layers, from scarves to shirts + hoodie + wool. It is part of autonomic nervous system regarding regulating body temp. A few things I've noticed are, once am cold?? I start shivering and shake. Hands, feet and nose. Also, if am not rested enough, or stressful situations can bring it on. It could be 70 and I'm shivering like its 20 below. Also, like Corina, I've referred to "dys" for shorter name.

It could help, but they may send you to another one for second opinion. There are specific lists and conditions SSDI will approve, and are listed. It seems from what have read in regards to folks with Dysautonomia disability varies. (from cognitive impairment , to syncope, physical limitations/dx.)

Am having a bit of sad time here regarding placing one of my cockatoos into a sanctuary. Was hard to make this decision, terribly hard because of my comittment to the birds I've taken in via rescue/rehab or foster. The type of cockatoo does not do well being re-homed, they really should never of been domesticated. Anyhow, I have to do this soon, and keep "forgetting" (lol, honestly it's true- brain fog get's the better of me) My partner is also my caregiver, this is driving him batty, for not everyone can tolerate the craziness that parrots can bring in daily life. I've found a great sanctuary, permanent about 2.5 hours north of here. It is so hard to do this, for one, I have to admit to myself that I am not what I use to be physically, (have been housebound since 2010)

Yes on attention to detail, and having someone proof read. It is not easy and tedious. I remember feeling silly about stating it was difficult to brush or manage my hair and required assistance. (My hair was waist long) Or for my job duties/ tasks/responsibilities. Because of being self employed artist for so long, it was an excercise to put down everything necessary to run a business, design, fabricate, wholesale, retail , gallery, etc. I had been so independent and fortunate with my career until falling ill. Interesting, when I filed, I assumed to be rejected and figured it would be a long time. Was qualified in three months. And am grateful. It's good to see support for others here regarding ssd and ssi. It's complicated process especially if your not feeling well. Natalie

Hi My sfn symptoms are very similar to what Naomi describes. Sfn can be tricky to get dx, biopsy and qsart are pretty much standard tools for diagnostic via dysautonomia. I've been trying utmost best to use diet (paleo) and supplements. Because im not candidate for the meds typically used for dys. Ive found alpha lipoic acid helpful for the nagging daily burn and tingle. The hardest and most painful are the hot areas, these are horrible- (like having rug burn plus glass crushed, air hurts those) For those i use that capsaican (sp?) Topical rub. the theory is it tricks the signal to brain. Its not easy, but has worked for me on two trouble areas, they are gone. Hopefully some of this may be helpful.

Gypsy! Love this concept. Sent the link to a health practitioner in Ireland, he loved it as well. Sometimes answers come in simple ways, it makes sense to me how first world has become disconnected, then rely on science to heal. Ive had fortunate experience of living off the grid on a very remote island in the Great Lakes. (sans electricity and running water) Best time of my life, short of the labor it required daily Im fascinated with ancient civilizations and how they lived in balance with earth. Also have had training under indigenous ways, culture. The first thing done for healing of illness is to address spiritual healing (because of the connection and balance we need as people) These old ways have been passed through generation since dawn of man. It wasnt until western modern society lost touch with these ways, and taught/trained to believe modern medicine as answer. Kind of symbolic with the rubber soled shoes , disconnect from what does provide for our survival as humans, earth My philosophy with this dys. is to balance both, modern medicine and alternative. Thank you for sharing these links and concept and happy feet on the ground to you in northern Indiana from an island out in the pacific northwest (lol, I have a thing for living on islands)

I enjoy this thread and concept. There are a few members here that posts and experience have inspired me as well what to choose for further research. Its very overwhelming when first diagnosed. Not to mention the journey of getting there. My oh, paf, and sfn was officially dx in February of this year. In a short time span have gone from almost bedbound to 20 mins on bike and a few other minor, yet big for daily living and quality. Ive changed diet, and question the medication prescribed, and supplements. Inspiration and knowing we arent alone to the path of better is a blessing here

Issie, Great link! Thank you for sharing.

INTJ And am female. (was always a bit of odd duck, but believe this helped me with art career, languages and music (classical trained ). Brain fog seems to Zap a lot of what use to have in regards.

Its snowing just north of here today, definitely chilly out. Upper 30s here on island today.

Last year I had exact same reservations and concern after gp had suggested Ritalin. I put it off for months until our family went through a major loss. (ex husband passed tragically ) I needed my brain and as much energy possible to support our daughter who was so close to finishing college. Anyhow, I asked and the gp at first had me on nuvigil. I very much liked this medicine, it helped tremendously with brain fog. However ins. Would not cover it and out of pocket it was $1,300 for thirty days. The next route was the Ritalin, which I did because it was affordable. I didn't care for it, compared to nuvigil. It was short acting, and I suppose looking back it did help with keeping my brain fog at bay to take care of paperwork, phone calls, etc- but I felt like my mind and body were never in synch. (my mind was there but body still goofy and slow ) I have paf, oh and sfn. Have seen a couple others with oh state Ritalin heĺps and actually with keeping bp up. If we hadn't gone through what happened last year, I would not have done either. Hope this is kind of helpful and always ask if you have questions with these meds to your Dr. Cheers

Her blog is pretty amazing, and knowledge with her medical background. Her humor is great, good to laugh in midst of dealing with dysautonomia. She recently received award for her blog, and acknowledged by her specialist for patient advocacy and awareness.

Sounds like a fun outing, get together I'll bring the Nuun tablets

Live on an island north of Seattle, near the water it is always cooler than mainland. Air conditioning is a good suggestion , because we rarely get high temps and low humidity. Dr. Thyerlie is also my Neurologist, it was sheer luck how I was referred to her, and think very highly of her knowledge. She is approachable and great staff at the Everett Clinic. I've only had testing at the U of Washington.

Definitely interested in your experience with this and look forward to updates.

This may sound off,, but would rather hear venting, then a person keeping this to self. I hope you have place and people to release all the frustration and love /healing for loss. Also, all the negative tests, been there done that, and believe there are others like us. 2.5 years for me to get dx, with cancer as the first ruling out. At some point, was so sick, I kind of gave up in the game it felt of being tossed from one specialist to tests, to appointments, etc. I too are like crazy, couldn't keep any weight on, 27lbs in three months and drenching sweats . No explaination was given as to why. I've noted a few others with dys that this has happened too. I do Hope they find answers quickly for you and sending you strength and Hope and healing

Ps- am curious if they have answer regarding the fever / weight loss. I ran low grade daily for year and half. (onset of what now is dx dysautonomia) Went through extensive infectious disease testing and auto immune. (both negative ) and with lumps in lymph nodes, nodules on ct scan of lung. The fever never went over 102.5 and took almost a year to gain weight back. Both with no explaination. Also, I do not have the POTS sub type, OH and PAF with SFN. Feel free to msg me, I wish I couldn't relate to what your going through, but do, and gladly lend an ear and heart.

Tpapik, same here, emergency c-section, was in hospital because of severe toxemia. That morning the Dr were going to determine his lung size and schedule planned c-section. I was so excited that day with the news and also that I could get out of bed, and shower that day (had been restricted to bed for weeks) I started blacking out in shower and well, the rest. He was stillborn, and I was at 8 months. Incredibly challenging to heal through on all level, physical and emotionally. I think it will be a lifetime healing process. The strangest hardest part was waking up from the c-section, I knew intuitively. I simply can not imagine feeling so poorly from abruption and blood loss and go through what you went through, my Heart goes to you and her. (I did end up getting blood transfusions post surgery, was in pretty bad shape) We named him Matthias Christopher, he was such a beautiful baby.

Have had degrees of this since onset in 2010. Did have sleep study last summer which was normal. Interesting as this has progressed, when I rest during day, there are times the minute I fall asleep I'm awakened by extreme urgency to urinate. (which is another nuisance ) Also am affected by the low pressure systems we get here in Puget sound (convergence zone) Cheers from Whidbey.

Last summer was prescribed Nuvigel, (same family as Provigil) it was $1,300 for thirty day script. Insurance would not cover. It was very helpful for mental fatigue, brain fog. And no side effects. Because it was too expensive, the gp then prescribed generic Ritalin. I did not care for that one, short acting, and not as effective for brain fog. If insurance would cover Nuvigil, I would definitely request to have it, it was that helpful. Apparently it's only covered for certain sleep disorder and not uncommon to have sleep study first. Provigil was suggested as other med, at slightly lower price of $700 for 30 days. (again, insurance would not cover )

Hi Marsha, yes I wish better days for everone here, I have Hope for all of us. :-) I have 3 salmon crested cockatoos, conure and a turtle dove .(had 27 at one time which was challenging but rewarding rehab/rescue) Red doberman male, Hickory and Boston terrier, Beanie. Not to mention the wildlife here, am blessed and grateful. :-)

Issie, curious how the Alpha Lipoic Acid does for you. Am On week two of taking it. (no benefit yet for the neuropathy , but hopeful combined with paleo )